13

Considerations for Disability Adjudication for Transgender and Gender Diverse Applicants and Applicants with Variations in Sex Traits

This report has presented research on the importance of understanding an individual’s gender identity and sex recorded at birth for proper evaluation of function and disability for people who suffer from various respiratory disorders, growth failure, kidney disorders, cancers of the reproductive system, and certain gynecological manifestations of HIV (see Chapters 8–12). In an ideal world, accurate information on a patient’s gender identity, sex recorded at birth, and variations in sex traits (VSTs) would be collected, recorded, and updated frequently in medical records. Electronic health record systems have the capacity to collect the patient demographic data that are fundamental to understanding the lived experience of transgender and gender diverse (TGD) patients and patients with VSTs, including the capacity to collect sexual orientation and gender identity (SOGI) data by asking a sequence of questions about a patient’s gender identity and sex recorded at birth (the “two-step” gender identity question, described in Chapter 3). Yet there is no guarantee that these data will be included in a given patient’s medical record, or if they are, that they will be accurate. As discussed in Chapters 3 and 4, health systems and insurers are improving SOGI data policies and practices, but there remain substantial roadblocks to the collection of these data across the health care system, including a lack of collection or reporting mandates, provider misconceptions about the utility and purpose of SOGI data collection, a lack of appropriate training for providers on the importance of SOGI data for clinical use and patient care, and complex institutional and systemic barriers.

For these reasons, the typical individual applying for Social Security disability benefits is not likely to have SOGI data documented (or documented accurately) in their medical record. This reality has left the experts on this

committee concerned about the following question: How will the Social Security Administration (SSA) know when TGD people and people with VSTs have applied for disability benefits?

One answer might be that SSA could use various techniques for identifying TGD applicants and applicants with VSTs by combing the medical records submitted as part of a disability application for other data that might serve to indicate or confirm gender identity or sex recorded at birth. For example, as described in Chapter 3, certain codes from the International Classification of Diseases, 10th revision (ICD-10) indicate a VST diagnosis or are related to care for TGD people; pharmacy data may indicate hormone therapy (e.g., testosterone or estrogen) that could indicate gender-affirming care; and certain keywords in narrative clinical notes might describe those with TGD or VST lived experience. While these data have their own limitations, they can help fill the gaps where patients’ SOGI data are missing or incomplete. Therefore, it could be useful for SSA to examine these other data points in the medical records of some applicants for disability benefits.¹

To implement this approach, however, SSA must first have medical records that contain these data. Consider an applicant with asthma, chronic obstructive pulmonary disease, cystic fibrosis, or other respiratory disorders under SSA’s disability Listings.² Chapter 8 describes the importance of understanding a patient’s gender identity, sex recorded at birth, and history and timing of gender-affirming hormone therapy (GAHT) to aid in clinical decision making around the interpretation of common pulmonary function tests, such as spirometry. Some respiratory health care providers may engage their TGD patients and patients with VSTs in robust discussion about what gender identity and sex recorded at birth may mean for evaluation of lung function. In these circumstances, SOGI data may be recorded in patient data fields, and narrative clinical notes or ICD codes may further describe important patient characteristics and the impact that gender-affirming care or care related to VSTs may have on clinical decision making. In turn, this information may be included in the medical records submitted to SSA as part of a disability application.

On the other hand, when a patient with a respiratory health complaint does not have access to a provider who understands the complexities and nuances of care for TGD people and people with VSTs, clinical notes (or

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¹ The committee notes that it would not be appropriate or necessary for SSA to conduct a broad search of applicant records (through algorithm-type methods) for the sake of determining TGD/VST status as labeling disability files as “TGD” or VST” is neither respectful of applicants nor beneficial for disability determinations overall. However, on a case-by-case basis, it may still be important for SSA’s adjudicators to examine narrative notes or ICD codes, as this information may be helpful for certain disability determinations.

² 20 C.F.R. § 404.1525 (2017), Listing of Impairments in Appendix 1; 20 C.F.R. § 416.925 (2017), Listing of Impairments in Appendix 1 of subpart P of Part 404.

other data in the medical record) may contain no information about TGD or VST lived experience. In these circumstances, how is SSA to know that it is adjudicating applications from TGD people or people with VSTs?

Moreover, providers’ implicit or explicit biases with regard to these patients may call into question the accuracy of any narrative descriptions related to sex or gender identity (these significant considerations are discussed in Chapter 3). But how is SSA to know from the applicant’s medical records where these biases exist, how they may have impacted the care provided, how they may have influenced the accuracy of various tests or measurements of function, and how all these factors may impact disability evaluation?

Perhaps additional medical records would contain pertinent clinical information. For example, suppose the disability applicant with a respiratory disorder also received gender-affirming care from a specialty clinic. If so, are such medical records likely to be submitted to SSA if they do not evaluate the disability at hand (in this case, a respiratory disorder)? How is SSA to know to obtain any such additional medical records if the records submitted to SSA—those that describe the applicant’s lung function and related disability—offer no information about gender identity or VSTs?

These are important questions for SSA as it attempts to adjudicate disability accurately for TGD applicants and applicants with VSTs. For the several disability Listings examined in this report, sex and gender identity data in the medical record that are incorrect or incomplete introduce error into SSA’s adjudication process by leading to identification of a disability that does not exist or failure to identify a disability that does exist.

The systemic, complicated, and stubborn gaps in SOGI data collection across the U.S. health care system cannot be resolved by SSA alone. However, SSA does have some tools at its disposal with which to address gaps in information for TGD applicants and applicants with VSTs. Chapters 3 and 4 describe how SSA could add SOGI data questions to disability application forms to help fill the gaps that result when health care providers, insurers, and institutions do not collect the patient data that SSA may need to adjudicate appropriately the applications for disability benefits of TGD people and people with VSTs. In addition, SSA can work to ensure the disability adjudication process—from the medical records it gathers, to the guidance it provides adjudicators, to the information it offers to applicants—results in an accurate and complete record that offers SSA the clearest picture of an applicant’s disability.

This chapter provides an overview of the various experts involved in disability determinations at different points in the process, their training and qualifications, and the information they gather or provide to support adjudication of disability applications. The chapter examines current SSA policies and opportunities for SSA, within its current structure and authority, to ensure that it obtains the appropriate medical documentation needed to make disability determinations for TGD applicants and applicants with VSTs.

OVERVIEW OF EXPERTS INVOLVED IN DISABILITY DETERMINATION

Throughout the disability determination process, many experts may be involved in examining an applicant’s impairment or reviewing an applicant’s medical record to help determine whether they meet SSA disability criteria. Table 13-1 outlines the five major categories of experts involved in various stages of the disability determination process.

One avenue for supporting these different experts in adjudicating applications for disability filed by TGD people and people with VSTs is for

TABLE 13-1 Experts Involved in the Social Security Administration’s Disability Determination Process

SSA to ensure that experts have appropriate training to recognize these applications when they are received, to determine how TGD or VST lived experience may impact various disability applications (if at all), and to know when to obtain or provide additional information to aid in accurate adjudication. Before examining training needs for various experts who contribute to disability determinations, it is first helpful to understand current SSA requirements for training and qualifications. The following sections walk through the basic role of each expert, their required qualifications, and training expectations for participating as experts in the disability determination process.

Disability Examiners

The disability examiner (DE) works with one or more medical and/or psychological consultants as an adjudicative team to make disability determinations.³ The DE is an employee of the state Disability Determination Services (DDS) office,⁴ which supports medical and psychological consultants by gathering all the evidence needed from the applicant and an applicant’s medical providers, requesting additional medical evidence if needed, and preparing the case for review.

SSA requires the DE to develop a complete medical history for each applicant for at least a 12-month period prior to the application.⁵ SSA (2023a) rules direct DEs to request records from all providers who have treated or evaluated the applicant during this period, except those who treated only ailments “clearly unrelated” to the claimed impairment. DEs request laboratory reports, X-rays, doctors’ notes, and other information used in assessing the applicant’s health and functional capacity from many types of providers, including physicians or psychologists; hospitals; community health centers; schools (for child applicants); and Department of Veterans Affairs, military, or prison health care facilities.

Training and Qualifications

The DE is a lay person without a medical degree or specialized medical knowledge. SSA does not set specific qualifications for DEs. State DDSs may set additional qualification criteria, such as requiring a bachelor’s or master’s degree.

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³ 20 C.F.R. § 404.1615 (2017).

⁴ As with many federal programs, SSA funds state-level entities—including DDS offices—to operate its programs across 54 jurisdictions (50 states plus the District of Columbia, Puerto Rico, Guam, and the Virgin Islands). While DDS offices must adhere to SSA standards and policies, each DDS has leeway to operate individually to meet the needs of applicants in their jurisdiction.

⁵ 20 C.F.R. § 404.1512 (2017).

SSA requires that DEs fully understand SSA disability criteria. At the federal level, SSA provides manuals, videos, case adjudication techniques, and other training materials through its Disability Examiner Basic Training Program. Many of these materials are available through the Program Operations Manual System (POMS)—the primary source of information DEs use to process applications for Social Security benefits (SSA, n.d.-a). The public version of the POMS resource is available online and provides a wealth of information about the factors DEs consider when making a disability determination.

While these federal-level resources form the basis of DE training materials, SSA itself does not generally conduct or identify specific training for state DDS offices. SSA regulations give “maximum management flexibility” to the DDS to manage the training and staff development process, and training requirements may vary across DDS offices (SSA, 2002).

Medical Consultants and Psychological Consultants

Physicians and psychologists or psychiatrists—known as medical consultants (MCs) or psychological consultants (PCs), respectively—work with the DE to review medical documentation collected as part of the disability application. State-level DDS offices may employ MCs and PCs internally as staff, may contract with outside consultants (who are often retired), or use a mix of both.

Using the case file prepared by the DE (with all medical records therein), the MC and/or PC follows SSA’s five-step sequential evaluation process (described in Chapter 1) to assess whether applicants meet the medical criteria for qualifying for disability benefits.⁶ MCs and PCs evaluate the evidence in the medical record; determine whether further medical testing is needed; assess the existence and severity of the applicant’s impairment(s); determine whether the applicant’s impairment(s) meets or medically equals a disability Listing (or, in the case of child applicants, whether the impairment(s) results in limitations that functionally equal the Listings); and in adult cases, perform a “residual functional capacity” assessment of the impairment.⁷

Training and Qualifications

An MC must be a licensed physician; a PC must be either a licensed psychologist or psychiatrist.⁸ If the disability application involves cognitive or mental impairments, SSA rules state that the consultant must be a psychiatrist or psychologist.⁹ SSA has no strict rules about which type of physician should

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⁶ 20 C.F.R. § 404.1520 (2012).

⁷ “Functional capacity” is the maximum level of physical or mental performance that the applicant can achieve given the functional residual limitations resulting from their medical impairment(s). 20 C.F.R. §§ 416.1016 (2017), 404.1616 (2017).

⁸ 20 C.F.R. §§ 416.1016 (2017), 404.1616 (2017), 404.1502(a)(1) (2017), 416.902 (2018).

⁹ 20 C.F.R. §§ 416.1016 (2017), 404.1616 (2017).

review adult applications that involve physical impairments, but for children who apply based on physical impairments, SSA will make a reasonable effort to find an MC who is a pediatrician or who specializes in a field of medicine appropriate to the child’s impairment(s). Many MCs work in the field of family or internal medicine, but individual DDS offices may employ or contract with physicians in specialty fields. The committee uncovered no statements from DDS offices that they employ or contract with MCs or PCs who have expertise in TGD health or in the health of people with VSTs.

MCs and PCs must fully understand SSA’s requirements for disability claims documentation so they can assess the adequacy of medical evidence in relation to SSA regulations and disability Listing criteria. As for DEs, there are numerous federal-level training resources for MCs and PCs, including the POMS (described above). SSA also issues the “Blue Book”—a comprehensive online resource providing health professionals with an understanding of the disability programs administered by SSA (n.d.-b). SSA does not conduct training for MCs and PCs at the state level; each DDS has flexibility to design training programs for MCs and PCs, and training may vary across states.

Medical Source Statement from Treating Provider(s)

As described above, the DE prepares the applicant’s case file for review by gathering relevant records related to the applicant’s medical history. One important piece of information the DE gathers is a “medical source statement”—an opinion from the applicant’s treating provider(s) regarding the nature and severity of the applicant’s condition, including how the applicant’s condition impacts their functional abilities (e.g., ability to work or engage in substantial gainful activity).¹⁰ Because neither the DE nor the MC or PC examines the patient in person, SSA regards the opinions of treating providers as a prominent source of information in the applicant’s record. The applicant’s treating sources are often best able to provide a detailed picture of the applicant’s medical impairment(s) and “may bring a unique perspective to the medical evidence that cannot be obtained from the objective medical findings alone.”¹¹ So long as the treating providers’ opinion in the medical source statement is not inconsistent with other evidence in the record and is well supported by medically acceptable clinical and laboratory diagnostic techniques, SSA regulations require disability examiners to consider the treating providers’ opinion along with all other evidence in the file.¹²

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¹⁰ 20 C.F.R. §§ 404.1513 (2017), 416.913 (2017).

¹¹ 20 C.F.R. § 416.927(c)(2) (2017).

¹² This paragraph was edited after release of the prepublication report to more accurately describe SSA processes and regulations.

Training and Qualifications

SSA regulations list qualifications for providers submitting a medical source statement (e.g., licensed physicians, licensed psychologists).¹³ While treating providers have access to all publicly available SSA training materials (such as the Blue Book and POMS), they are not SSA employees and may not have specific training in understanding how their patient’s condition(s) may qualify them for disability benefits.

Consultative Examiners

When the gathered medical evidence in a disability application is insufficient to support a disability determination, DDS offices may order a consultative examination (CE).¹⁴ The need for a CE may arise in several situations; for example, the medical record may be missing important tests or evaluations, or these may have been conducted 6 or more months ago.¹⁵ Also, there may be inconsistency in the medical record, and having an additional examination would help clarify the applicant’s case. Ultimately, it is within the discretion of the adjudicator team (consisting of the DE and MC or PC) to order a CE for any given disability applicant.

Training and Qualifications

The experts who perform a CE are independent clinicians who have contracted with the DDS office to perform CEs for a fee. SSA regulations require that consultative examiners be licensed and have the training and expertise necessary to perform the test or examination required.¹⁶ An applicant’s own medical source may perform the CE if that provider meets SSA’s qualifications; indeed, SSA regulations state a preference for this arrangement because that provider is most familiar with the applicant’s condition(s).^17,18 The “Green Book” is an online resource for health professionals who may serve as consultative examiners (SSA, n.d.c). It explains SSA’s disability programs and policies, what to look for in reviewing a case as a consultative examiner, and the essential elements of CE reports.

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¹³ 20 C.F.R. §§ 404.1502(a) (2017), 416.902(a) (2018).

¹⁴ 20 C.F.R. § 404.1519 (2000).

¹⁵ 20 C.F.R. § 404.1519a (2012).

¹⁶ 20 C.F.R. § 404.1519g (2017).

¹⁷ 20 C.F.R. § 404.1519h (2017).

¹⁸ When the DDS is unable to obtain a CE from the applicant’s provider, the DDS will select a qualified provider to perform the CE. If the applicant is not satisfied with the selected consultative examiner, SSA rules allow them to object on a number of grounds (including the presence of a language barrier, travel restrictions, or the applicant’s previous negative experience with that provider). 20 C.F.R § 404.1519j (2000).

Medical Experts (at Appeals Stage)

If denied benefits after their initial application, applicants may request a reconsideration¹⁹ within 60 days of initial determination; the DDS’s DE, MC, and/or PC team (described above) makes the disability determination at the reconsideration stage. If reconsideration again results in a denial of disability benefits, the applicant can appeal for a hearing with an Administrative Law Judge (ALJ). The ALJ may ask an outside medical expert to review the medical record and provide an impartial medical opinion about whether an applicant’s impairment(s) meets or medically equals a disability Listing (SSA, 2020). The ALJ will consider the medical expert’s opinion when making a ruling.

The medical expert gives an opinion on the applicant’s impairment(s) based on the evidence provided in the case record. Unlike the DE, the medical expert does not solicit additional records from providers (e.g., they cannot order a CE or request medical source statements), but they do review any additional information submitted by the applicant in connection with the appeal. For example, the applicant might submit additional medical records that were not part of the original case file. If, after reviewing the applicant’s case, the medical expert requires additional information, they may prepare a written list of questions for the ALJ. The ALJ will then decide whether the requested information is pertinent to making a disability determination and if so, how that additional information should be obtained.

Training and Qualifications

Medical experts must understand Social Security disability policies in addition to having relevant medical knowledge of the applicant’s health issues. The Medical Expert Handbook provides guidelines for medical experts who review disability cases (SSA, 2017). An applicant cannot get their own treating provider to testify on their behalf during the administrative hearing; the medical expert must be someone who meets SSA criteria and is invited to testify by the ALJ.

Summary of Various Experts Involved in the Disability Determination Process

Figure 13-1 shows the major experts described above, where they fall in the various stages of the disability determination process, and what information is compiled in the applicant’s case file upon disability determination and upon appeal.

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¹⁹ SSA policy requires programs and activities to be conducted in a way that does not discriminate on the basis of “race, color, national origin, religion sex (including sexual orientation and gender identity), disability, age, or parental status” (SSA, 2023b, p. 1). There is a process for applicants to file a complaint of discrimination if applicants believe an SSA employee or administrative law judge “acted upon [the] claim based on bias or discrimination instead of the facts of [the] case” (SSA, 2023b, p. 1).

GUIDANCE FOR EXPERTS INVOLVED IN DISABILITY DETERMINATIONS

Given the complexities of the disability determination process for some TGD applicants and applicants with VSTs, DEs, MCs, and PCs, as well as other experts, may need training and guidance on how aspects of gender-affirming care or other aspects of health, treatment, and care described in this report impact disability determinations. Areas of training and guidance may include (1) understanding how gender-affirming care and care related to VSTs may impact measurements of function related to various disability Listings; (2) identifying TGD applicants and applicants with VSTs from medical records; (3) knowing when additional medical records may be needed to describe gender-affirming care or care related to VSTs and how this additional information may impact disability adjudication; (4) knowing when an applicant’s medical record does not fairly or accurately assess the applicant’s condition such that it may be appropriate to order a CE; and (5) understanding biases often present in the medical records of TGD people and people with VSTs and how these biases may have impacted care and treatment received or recorded in the medical record (including in medical source statements by the treating provider).

These are complex issues related to health and disability. As discussed throughout this report, chronic disease among TGD people and people with

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²⁰ This note was added after release of the prepublication report to clarify SSA processes.

VSTs has not been well studied, and this committee uncovered few experts with knowledge on these issues. Therefore, it may not be practicable for individual DDS offices to obtain the local expertise needed to guide robust training for DEs, MCs, and PCs on these topics. The following sections offer considerations for where, within the current disability determination process, SSA might be able to offer guidance to adjudicators on these complex issues.

Training Conducted by Federal-Level SSA (or Regional Offices) for Complex Issues

While SSA policies give state-level DDS offices flexibility and discretion in conducting staff trainings, SSA rules state:

The intersection of TGD and VST lived experience with disability is arguably complex, and geographic differences or lack of local expertise may mean that individual DDS offices are not equipped to deliver training on these topics. Therefore, this is an area in which SSA could consider offering federal-level trainings and other resources. This approach would ensure consistency in the training on these issues across the 54 DDS jurisdictions and would support jurisdictions that have limited local-level expertise. Consistent training can also help offset the fact that most MCs and PCs

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²¹ 20 C.F.R. §§ 404.1622 (2012), 416.1022 (2012).

who work to adjudicate disability applications are unlikely to have a specialty (or perhaps, any medical training at all, as described in Chapter 3) in gender-affirming care or in care for people with VSTs. The Veterans Health Administration (VHA) (n.d.), the Sexual and Gender Minority Research Office (n.d.), and the National Center for HIV, Viral Hepatitis, STD, and TB Prevention (CDC, 2024a,b) offer evidence-based trainings and materials that could inform SSA’s trainings, along with information provided in this report.

Hotline for Applications Related to TGD Health or the Health of People with VSTs

While training DEs, MCs, and PCs to understand the complex needs of TGD applicants and applicants with VSTs is important, the committee discussed at length how difficult these cases are and the reality that medical data to support decision making for these applicants is not always available. Thus, training may go only so far in improving disability adjudications.

SSA might better support its adjudicators in addressing these challenging questions by creating a hotline for DEs, MCs, and PCs to call when reviewing applications from people who are or may be TGD or who have or may have VSTs. One model worth considering is the National Transgender and Gender Diverse E-Consultation (e-consult) service operated by the VHA (Blosnich et al., 2019). Through the e-consult, VHA providers of any discipline can contact experts in TGD health to obtain a second opinion on appropriate care and treatment. The VHA operates two expert interdisciplinary teams (one located in Minneapolis, Minnesota, and the other in Tucson, Arizona) that receive and review e-consult requests from VHA providers. The e-consult team conducts an extensive and comprehensive chart review and consults the literature on best practices before providing an answer to the VHA provider with recommendations for the patient’s care and treatment (Matza and McConnell, 2023). The VHA’s e-consult program is meant to promote high-quality care for TGD veterans and increase competence among providers who may not have had specific training in transgender health during their graduate medical school education or other formal training (Matza and McConnell, 2023).

SSA could consider developing a similar national or regional specialty consultation service for the various experts that contribute to disability determinations (for the purposes of this discussion, the committee labels this team of experts the “TGD/VST specialist team”). Where feasible, hiring experts as part of the TGD/VST specialist team who have lived experience as being TGD or having a VST is important. Among other areas, the TGD/VST specialist team might consult on (1) whether there are gaps in the case file (and additional records need to be obtained); (2) whether

ordering a CE is appropriate; (3) whether treating providers have assessed the applicant using appropriate criteria; (4) whether and how hormone or other gender-affirming therapy impacts the applicant’s case; (5) how best to adjudicate medical records that use both male and female reference ranges for interpreting function²²; (6) whether the applicant had “good cause” not to follow prescribed treatment (see further discussion below); (7) the extent to which co-occurring conditions need to be considered; and (8) whether stigmatizing language found in medical records signals suboptimal care delivery and the need for additional records or information (such as the opportunity for a CE). Similar to the VHA system, the TGD/VST specialist team would help to equalize access to accurate adjudication, especially in regions where area providers may be less knowledgeable about or accepting of TGD health or the health or persons with VSTs. Treating providers (who prepare medical source statements for the applicant’s file), consultative examiners (who provide additional physical exams to help clarify the applicant’s case), and medical experts (who review the case file on appeal) might also find it helpful to have a specialist to consult to better understand how questions around TGD and VST health, care, and treatment impact disability evaluation; SSA could consider making the TGD/VST specialist team available to these experts as well.

While the committee sees a system similar to the VHA e-consult system as potentially beneficial for the various experts who support disability adjudication, committee members expressed concern about reducing access for TGD applicants and applicants with VSTs if only one regional or national team can review applications for all of these populations. In many instances, being TGD or having VSTs may have no bearing on the documentation of disability under SSA criteria, and instituting requirements that the TGD/VST specialist team be consulted in every circumstance could introduce artificial problems into the system (e.g., unnecessary delays in applications being processed or the introduction of biases). At the same time, the committee would not want to limit access to the TGD/VST specialist team to only certain applicants (e.g., only those with the health conditions explored in this report), as there could be reasonable questions related to TGD/VST health in connection to other disability Listings. Therefore, SSA might develop guidance for when to consult the TGD/VST specialist team, such as in connection with the specific health conditions discussed in this report or with other aspects of affirming care and its impact on disability and health as discussed in general terms in this report.

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²² As discussed in Chapters 8–10, where there are calculations of lung function, kidney function, or growth failure using both male and female reference ranges, SSA adjudicators may best serve TGD applicants who receive gender-affirming hormone therapy by selecting the lowest recorded value to determine presence of disability.

Requirements for Collecting Medical Evidence Related to Gender-Affirming Care and Care for People with VSTs

As described above, DEs, MCs, and PCs have a role in shaping the outcome of disability adjudications because they determine what medical records and other information are to be collected for the case file. The case file forms the fundamental materials available for the medical expert to examine upon appeal as well, so compiling a complete case file from the beginning is important for accurate disability adjudication.

Training and specialty resources (such as a TGD/VST specialist team as suggested above) can support DEs, MCs, and PCs in knowing where and when to obtain additional medical records for TGD applicants and applicants with VSTs. Nonetheless, given the complexity of the issues involved, it may be helpful to have clear standards in place for obtaining such medical records when they are needed to adjudicate a disability application. Clear standards can reduce difficult decision making for adjudicators and ensure that all similarly situated applicants have the same opportunity to have complete medical records in their case file.

In the case of TGD applicants and applicants with VSTs, the adjudicator team makes at least four important decisions that may impact the level of information present in the medical record: (1) whether to obtain medical records beyond 12 months, (2) whether records documenting gender-affirming care or care for VSTs are “related” to the claimed impairment(s), (3) whether specialists involved in gender-affirming care or care for VSTs can be considered “treating providers” for purposes of a medical source statement, and (4) whether to order a CE. Decisions about what medical records to collect may also impact (5) whether medical records show “good cause” for failure to follow prescribed treatment. These issues are discussed in the sections below.

(1) Whether to Obtain Medical Records beyond 12 Months

SSA regulations require that the DE collect medical records for at least a 12-month period prior to the disability application. DEs must use their judgment as to whether information is needed beyond that period, and SSA regulations provide various reasons why obtaining such additional records may be necessary (e.g., to establish severity of condition or symptoms, to determine the date the applicant became unable to work because of their medical condition) (SSA, 2023a).

For purposes of this study, the important question to consider is whether evidence of gender-affirming care or care related to VSTs will be present in medical records for the prior 12-month period. For some applicants, the answer may be yes. But for applicants who received care many years ago,

this information may not be present in the most recent medical records, especially if their providers do not take a detailed history or understand the need to ask about gender identity and sex recorded at birth for purposes of clinical decision making.

Suppose, for example, an adult transgender applicant with chronic kidney disease accessed GAHT for many years but stopped this therapy 2 years ago (this could be for any number of reasons—individual preference, change in economic circumstances, change in health insurance, etc.). Would evidence of GAHT from 2 years ago be present in this applicant’s medical records if the records cover only the prior 12 months? Suppose the medical records for the past 12 months do not otherwise indicate that the applicant is transgender or mention anything about prior gender-affirming care. How is the DE to know to request any further documentation? If no additional records are requested, the MC and/or PC will not have potentially pertinent information about the applicant (e.g., that GAHT could have impacted kidney function, as described in Chapter 10).

POMS DI 22505.010, Developing Longitudinal Medical Evidence (SSA, 2001), lists certain situations in which medical evidence beyond the standard 12-month period may be required to make a fair and accurate disability finding. SSA might consider including within DI 22505.010 the example of obtaining gender-affirming care records beyond 12 months for TGD applicants and care records related to VST care beyond 12 months for applicants with VSTs.

(2) Whether Records Documenting Gender-Affirming Care or Care for VSTs Are “Related” to the Claimed Impairment

SSA guidance states that the disability examiner need not request records from providers who have treated ailments “clearly unrelated to the impairment(s)” at issue for the disability determination, offering “routine dental records” as an example of a record unrelated to an impairment (SSA, 2023a). This limitation makes sense. SSA does not want to slow down the adjudication process by having the DE pursue unnecessary records that will not be helpful in making a determination about disability.

However, subjectivity is involved here, as the DE makes the judgment call as to whether care provided is “related” to the disability claim at issue. Suppose records from an applicant’s treating pulmonologist make no mention of gender-affirming care but state that the applicant removed a chest binder prior to a spirometry test (a test used to assess lung function, as described in Chapter 8). Suppose other medical records, if obtained, would show that the applicant currently accesses GAHT and uses a chest binder daily for 10 or more hours. If the DE does not draw a connection between the pulmonologist’s chest binder statement and the possibility of other

records describing gender-affirming care, the DE will not have obtained pertinent information about the applicant’s lung health, and the case file will not paint a full picture of the applicant’s circumstances. Depending on the specifics of the applicant’s case, this lack of information could lead to an incorrect disability determination.

There are many scenarios in which the DE might fail to acquire records documenting gender-affirming care, as these records may seem unrelated to the impairment at issue. Therefore, SSA could consider including a statement under POMS DI 22505.006, Requesting Evidence—General (SSA, 2023a), that records related to gender-affirming care and care for VSTs may be related to certain impairments, including those examined in this report. SSA might also consider communicating to disability applicants that medical records related to gender-affirming care and care for VSTs may be relevant to certain disability applications and that it may be appropriate to use the additional “remarks” section on disability applications to describe how TGD or VST lived experience has impacted their health or opportunity to receive appropriate care for their impairment(s). Applicants should always have the choice to submit such records.

(3) Whether Specialists Involved in Gender-Affirming Care or Care for VSTs Can Be Considered “Treating Providers” for Purposes of a Medical Source Statement

The medical source statement from an applicant’s treating provider is important in disability determinations.²³ The questions for purposes of this study are: Who is the “treating provider” writing the medical source statement, and what is their knowledge of gender-affirming care or care for VSTs and how this care impacts chronic disease and health?

Suppose a transgender individual applies to SSA based on a claim of disability related to reproductive cancer. Suppose that individual receives cancer treatment from an oncologist but also regularly sees specialists who assist with GAHT. Whom does SSA consider to be the “treating provider”?

It seems likely that the disability examiner would view the oncologist as the “treating provider” because that provider has presumably been heavily involved with cancer treatment decisions and understands various side effects of the treatment or the cancer itself that may be impacting function. A medical source statement from the treating oncologist would therefore be important information to include in the applicant’s record.

An argument can be made, however, that the gender-affirming care specialist whom the patient sees regularly is also a “treating provider.” Might the endocrinologist (or other specialists involved in gender-affirming

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²³ This sentence was edited after release of the prepublication report to clarify SSA processes.

care) also have insight into the applicant’s ability to work or engage in substantial gainful activity? After all, these providers might better understand co-occurring conditions or other factors that impact the applicant’s overall health and are likely to be more attuned to the circumstances the applicant could be facing (e.g., challenges in obtaining appropriate health care that may contribute to poor health). Providers who offer gender-affirming care may also have different insight from that of other treating providers should there be a question as to whether an applicant failed to follow prescribed cancer treatment by continuing with gender-affirming care (see below).

SSA could consider including a statement in POMS DI 24503.005, Categories of Evidence (SSA, 2021), that specialists involved in gender-affirming care or in the care of people with VSTs may serve as acceptable medical sources. SSA might also consider communicating to potential disability applicants that medical source statements from providers engaged in gender-affirming care and care for VSTs may be relevant to certain disability applications. Applicants should always have the choice to submit such records.

(4) Whether to Order a Consultative Exam

The committee discussed at length the relative value of a CE in disability adjudications for TGD applicants and applicants with VSTs. Like anybody else, these applicants should have access to the CE where there are gaps in their records (e.g., a spirometry test was not given or was given more than 6 months ago). But suppose the adjudicator team is concerned that the treating provider of a TGD applicant or an applicant with a VST did not issue appropriate tests or that the tests performed were not interpreted correctly, such that the evidence in the medical record may be unreliable. Would ordering a CE be appropriate?

On one hand, the CE is a potentially important tool for correcting inaccurate or missing information in the medical record. As TGD people and people with VSTs face significant challenges in accessing quality health care by providers who are competent to understand their health care needs, the CE could be an opportunity to get things right. For example, as explained in Chapter 8, current guidelines state that spirometry should be interpreted on the basis of sex recorded at birth (Graham et al., 2019; Stanojevic et al., 2022). If the MC reviewing the case file of a transgender male saw that the treating provider had incorrectly used the male reference range rather than female (the applicant’s sex recorded at birth), perhaps calling for a new spirometry test via a CE would be appropriate to correct the medical record.

On the other hand, the committee recognizes the challenges here: the science on how TGD and VST lived experience impacts chronic disease, function, and disability is limited, and experts working in these areas do not always agree on the best approach. In the case of spirometry interpretation, some pulmonologists who are accustomed to interpreting spirometry for TGD patients may run spirometry results against both reference sex ranges (“dual calculations”) to improve decision making (Fechter-Leggett and Foer, 2023), and it may be appropriate to use affirmed gender, rather than sex recorded at birth, to interpret spirometry for patients who accessed GAHT during puberty (Fechter-Leggett et al., 2022). Here, the case file of a transgender male could show spirometry interpretation using the male reference range rather than the female (the applicant’s sex recoded at birth), but this decision could have been made carefully in concert with the patient and with information about the patient’s history of gender-affirming care in mind.

It may be difficult for MCs to know by reading medical records whether spirometry results have been interpreted inaccurately, or purposefully and thoughtfully. Therefore, it may be difficult to know when a CE is warranted. Furthermore, if a CE is ordered, is a given DDS office likely to be able to engage a provider who is highly trained to interpret spirometry for TGD people or people with VSTs?

While the above example centers around spirometry, similar scenarios are likely for interpretation of kidney function or growth failure measurements. Certainly, having more information in the case file can be useful, but the committee is wary of policies that might force TGD applicants or applicants with VSTs to submit to additional testing from medical providers, especially where many of these individuals have already faced discrimination in health care settings, and especially when available providers may be no more competent than providers already seen to assess their function.

For these reasons, the committee does not conclude that there is any need to order a CE as a general matter for TGD applicants or applicants with VSTs. In cases where interpreting the medical record is challenging, the

TGD/VST specialist team (discussed above) could provide useful consultation in determining when a CE is appropriate.

On the other hand, the CE could provide an opportunity to run test results/measurements against both reference sex ranges, if appropriate, or to administer appropriate alternative tests that have not been administered previously but could aid in determination of function. For some conditions within the committee’s statement of task, the SSA disability Listing criteria include alternative tests. Under the adult Listing for cystic fibrosis (3.04), for example, SSA criteria allow for two different tests to show lung function: spirometry and pulse oximetry (SSA, n.d.-d). Of these, only spirometry includes sex-specific interpretation; questions around sex recorded at birth or gender identity are not relevant for interpretation of a pulse oximetry test. Ordering a CE to obtain a pulse oximetry measurement, therefore, could be appropriate for the applicant and helpful to SSA, as providers administering the CE need not understand the complicated science around the impact of gender-affirming care on lung function to administer and interpret a pulse oximetry test.

(5) Whether Records Show “Good Cause” for Failure to Follow Prescribed Treatment

SSA regulations state that an individual who otherwise meets the requirements for receiving disability benefits will not be entitled to benefits if “the individual fails, without good cause, to follow prescribed treatment that we expect would restore his or her ability to engage in substantial gainful activity” (SSA, 2018, paragraph A).²⁴ Evidence of “prescribed treatment”²⁵ must come from the applicant’s own medical records; while the MC or PC may have the opinion that certain treatment should have been prescribed, the expectation to follow prescribed treatment applies only to treatment that was actually prescribed, as evidenced by the medical record. The medical source statement from the treating provider may also describe prescribed treatments and clarify whether the applicant followed treatment advice.

If an applicant did not follow prescribed treatment, SSA rules require adjudicators to determine whether the individual had “good cause” for

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²⁴ 20 C.F.R. § 404.1530 (2017).

²⁵ Under the regulations, “prescribed treatment” means “any medication, surgery, therapy, use of durable medical equipment, or use of assistive devices. Prescribed treatment does not include lifestyle modifications (e.g., dieting, exercise, or smoking cessation)” (SSA, 2018, paragraph B, condition 2). If there is evidence in the medical record that an applicant did not follow prescribed treatment, the MC or PC must assess whether the prescribed treatment, if followed, would have restored the individual’s ability to engage in substantial gainful activity (thus rendering them ineligible for disability benefits) (SSA, 2018).

not following that treatment. SSA regulations offer several examples of what could be considered good cause, including religious objection to the treatment, inability to afford the treatment, and the treatment’s posing a high risk of loss of life or limb. “Medical disagreement” is another acceptable good cause for not following prescribed treatment (SSA, 2018):

TGD patients may sometimes be advised to forgo gender-affirming care to improve outcomes for chronic care treatment. For example, an oncologist might advise a patient with cervical cancer to stop receiving GAHT before starting chemotherapy. Likewise, a pulmonologist might advise a patient with cystic fibrosis to cease GAHT or chest binding to improve lung function. Of course, the decision to stop receiving gender-affirming care is not an easy one given the significant benefits this treatment may have for the patient’s mental health and well-being (see Chapter 5). Other providers may advocate for the patient to continue with gender-affirming care despite chronic care needs. If one provider thinks a patient should continue GAHT and another thinks they should stop, this situation arguably falls under the “medical disagreement” category for good cause.

SSA could consider including the decision to continue gender-affirming care and treatment as an example of good cause under the POMS DI 23010.011, How to Make a Failure to Follow Prescribed Treatment (FTFPT) Determination (SSA, 2019).²⁶

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²⁶ The committee notes that in June 2023, SSA (2023d) included “risk of addiction to opioid medication” as a suitable “good cause” for a person with inflammatory bowel disease to refuse to take prescribed narcotic medication to control pain. The need to weigh the benefits of chronic disease management against the risks of substance use can be considered a corollary to the similar need to balance the mental health risks of forgoing gender-affirming care against the benefits of chronic disease treatment.

However, MCs reviewing the case file can find such “medical disagreement” surrounding gender-affirming care in the record only if the DE has first obtained records related to gender-affirming care or asked for a medical source statement from providers of such care. Thus, it is important for DEs to have clear standards for requesting this additional medical information. In addition, it may be appropriate for TGD applicants and applicants with VSTs to use the “remarks” section on disability applications to describe additional factors weighing into a decision to forgo prescribed treatment in support of gender-affirming care (e.g., lack of access to knowledgeable providers or exposure to discriminatory care practices). SSA might consider communicating to disability applicants that such information could be relevant to their application.

SUMMARY OF KEY POINTS

Given the complexities of the disability determination process for some TGD applicants and applicants with VSTs, experts involved in the disability determination process may need guidance. As presented in this chapter, the current structure of the SSA adjudication system provides opportunities to offer such guidance. First, adjudicators may need training on the intersection of TGD/VST lived experience with disability (including the structural disadvantages facing many TGD people and people with VSTs and how these disadvantages may impact disability), and federal- or regional-level trainings on these topics could support DDS jurisdictions that lack local expertise. A hotline similar to the VHA’s e-consult might support adjudicators who need consultation when issues concerning TGD health or the health of people with VSTs are complex, and medical records have gaps or inconsistencies. SSA might consider using its authority under 20 Code of Federal Regulations §§ 404.1622 and 416.1022 to deliver trainings and consultative services at the national level in recognition of the complex nature of these issues.

In addition, a statement within POMS that medical records related to gender-affirming care and care for people with VSTs may be relevant for disability evaluation is important for reducing difficult decision making among adjudicators. Inclusion of such a statement would help ensure that all similarly situated applicants have the same opportunity to have complete medical records in their case files. Finally, communicating to potential disability applicants that medical records related to gender-affirming care and care for VSTs may be relevant to their disability application would assist applicants in gathering medical documentation that provides the clearest picture of their health.

The statement of task asks the committee to focus on medical criteria within SSA’s Listing of Impairments and, therefore, this chapter focuses on

aspects of the disability determination process related to assessing medical impairment under SSA’s Listings. As this report has highlighted, assessing disability for TGD people and people with VSTs is not easily done within the rubric of the Listings; this chapter has highlighted how difficult these disability determinations may be and the need for training experts involved in the adjudication process to make fair and accurate determinations where questions of sex and gender identity arise.

The committee notes that whether an applicant meets (or medically equals) the criteria for one of SSA’s Listings is only one step in the disability determination process. Chapter 1 (Box 1-1) explains other steps in the process, including assessing an applicant’s “residual functional capacity” or the maximum level of physical or mental performance that the applicant can achieve given the functional limitations resulting from their medical impairment(s). In other words, does the adult applicant have the functional capacity to work (perform substantial gainful activity) given their impairment(s)? Does the child applicant’s impairment(s) prevent them from functioning at their expected level of development?

These function-related questions can be answered for the individual without making difficult clinical interpretations around sex or gender identity. Certainly, TGD or VST lived experience will factor into the assessment of functional capacity, but the report has not focused on these areas as they are outside of the statement of task and areas of expertise among committee members. However, the complexities raised by sex and gender identity reveal problems with relying heavily on measures of impairment severity as measured by laboratory tests or other evaluations. After all, impairment severity—ability to meet or medically equal criteria under the Listings—may not be a proxy for functional capacity for all applicants. The committee highlights for SSA the importance of evaluating functional capacity for TGD applicants and applicants with VSTs as a critical component of determining disability. The training and guidance mechanisms suggested by the committee in this chapter may apply to these other important aspects of disability determination as well.

REFERENCES

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